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Search Results

Story of Robert Purkis
A small boy's health problems, possibly Leigh's Syndrome, and how his parents have helped him
improve his quality of life.
http://swpurkis.pwp.blueyonder.co.uk/index.html
Reviews Rating: Not yet Rated Whois Check

XXXXY Syndrome
Information on this rare chromosomal abnormality.
http://www.xxxxysyndrome.com
Reviews Rating: Not yet Rated Whois Check

Joy's Page
Personal account about a daughter having Opitc Nerve Hypoplasia, Septo-Optic Dysplasia and had
either a Congenital stroke or has schizencephaly.
http://www.lebaronfamily.com
Reviews Rating: Not yet Rated Whois Check

Robert Kenneth Picklesimer
Born with Jeune Syndrome or Asphyxiating Thoracic Dystrophy in Louisville Kentucky. He underwent
corrective surgery in San Antonio Texas, called the Titanium Rib Project.
http://www.picklesimers.com/robert_kenneth.html
Reviews Rating: Not yet Rated Whois Check

GotGod?com
A family and memorial website dedicated to their son, Nathan Philip Batman, who passed away as a
result of Trisomy 13, or Patau's Syndrome.
http://gotgod.com
Reviews Rating: Not yet Rated Whois Check

Taryn's World: About Switches
Personal page for kids and parents about genetic disorders, especially mannosidosis.
http://www.tarynsworld.org/taryn/switches.htm
Reviews Rating: Not yet Rated Whois Check

Maddy's Page
The story of Madison Wigglesworth who has hurler syndrome. Includes photo album and links to
informative sites.
http://members.aol.com/kymwig
Reviews Rating: Not yet Rated Whois Check

Daniels Neurofibromatosis page
A child living with neurofibromatosis and optic glioma with links.
http://www.ilynn6.freeserve.co.uk
Reviews Rating: Not yet Rated Whois Check

Treacher Collins Syndrome - A Personal View
UK based website, containing information about the disorder, with helpful links and discussion
forum.
http://www.treachercollins.co.uk
Reviews Rating: Not yet Rated Whois Check

Ashly's Skeletal Dysplasia
A mom describes her daughters disorder which is thought to be a metabolic disease similar to
mucopolysachharisdoses. Also links to other related sites.
http://www.angelfire.com/or2/ashlysworldofwonders/about.html
Reviews Rating: Not yet Rated Whois Check

Alpha1 Antitrypsine Deficiency
One man's perspective and journey with A1AD and a list of links and other resources from the
internet.
http://home.att.net/~a1ad/intro.htm
Reviews Rating: Not yet Rated Whois Check

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